H22 Developing an evidenced-based model to optimize parental support for discussing huntington’s disease (hd) with children

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Abstract

Background

There is limited research focusing on coping strategies for families living in an HD home. There is even less research focusing on the difficulties parents have discussing HD with their children.

Aims

The Huntington’s Disease Youth Organization (HDYO) hopes to change this. Since its inception in 2012 HDYO has received numerous inquiries requesting help from parents who are having difficulty talking to their children about HD. A grant was obtained to conduct research with parents of children in HD-affected families to determine: 1) the perceived challenges they face in talking to their children about HD and, 2) the most accessible formats for supporting materials.

Method

Families who have contacted HDYO from 2012 to the present were contacted inviting their participation. Additional contacts were obtained through social media platforms. Parents were asked a series of questions initially regarding demographics and subsequently targeting the perceived challenges of talking to their children about HD; if they have taken advantage of available supporting material; and whether the material accessed was written, online, or through conversation with healthcare professionals.

Outcome

The information collected was categorized, a data set created, and the material analyzed. A final report will be generated to enable submission of grant requests to other agencies.

Conclusion

The subsequent funding will allow for the creation and dissemination of materials that will include (for example) written materials, online videos, and interactive materials to assist parents and guardians in discussing HD with children.

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